Northshore family fights to find cure for child's disease

Trevor Rickerson, 19 months old, battles degenerative disease

A Northshore boy is fighting an incurable genetic disease, which has filled his and his family's lives with tears, smiles and love.

Trevor Rickerson, who is 19 months old, is diagnosed with spinal muscular atrophy, a terminal, degenerative disease that robs a child of being able to walk, sit, stand, eat, breathe and swallow.

A year ago, Trevor’s parents, Brittany and Trey Rickerson, were given the news by doctors.

They were both carriers of the disease, and Trevor was diagnosed with Type 2.

“When he was given the diagnosis, I was like, 'Alright, everyone is given a journey, and this is ours. We'll just make the best of it,'” Brittany Rickerson mother, Brittany said.

SMA is the leading genetic killer in kids under 2 years old -- about 1 in 6,000 babies are born with it.

Currently, Trevor is in a number of therapies and gets around with a wheelchair. However, over time, he may lose more and more motor functions and suffer from a number of respiratory issues.

"I try not to let myself go there with what could happen,” Brittany Rickerson said. “Just enjoying every moment I have now."

"He is still a kid, regardless. I mean, he still wants to do fun things, like move around,” Trey Rickerson said. "And that hurts because he wants to be out with the other kids and all."

The Rickersons aren’t giving up, they said, in their battle to save his life.

They are working with other parents of children with SMA to raise money and awareness for gene therapy.

The Rickersons said it’s the most promising treatment they have right now. Gene therapy has cured SMA in mice and has been given safely to primates.

"It's our job in the SMA community to raise money for it; to reach human clinical trials, and we are close to it,” Brittany said. “We need to raise a million dollars in a year, and everyone is working so hard for it."

While the therapy hasn’t been approved by the Food and Drug Administration, the hope is to stop the progression of the disease and help kids lead normal, happy lives.

"My goal is really to show his love every day,” Brittany Rickerson said. “I'm thankful every day that I can see my baby smile.”